Hi everyone newbie coming in!


I have SLE and have had the pleasure for 14 years!

But I am a lucky one not too many nasties just joint pain dry eyes fatigue and a few other problems.

I wonder if anyone else has trouble at work employers who don't seem to understand

What is it we hear but you look ok you don't look iLl how many have heard that?

Keep smiling

Luv Zedcars

7 Replies

  • hi ive been diagnosed with sle since 2004 but it was talked about back in is good to you 1998 i have had the same reaction from my employers especialy the manager and his wife i have had to stop work on the instruction of my reumatologist and gp they just would not believe i was so ill. however a letter from my gp left them shocked it would seem that with sle the better you look the worse you feel

    a happy new year to you all and hope 2014 is good to you all g

  • Hi

    Thanks for you reply.

    It's nice to chat and get to know other lupies!

    Zed Xxx

  • Hi zed cars

    I don't hear it very often, but when I ask for time off for appointments, they go quiet as if they've forgotten or I tend to have others telling me how ill they are and then suddenly realise and say oh and how are you? :)

    It does make me more considerate of others, if I don't look I'll, maybe they also have an illness that also doesn't jump out at you.

    Let's hope we continue to not have too many problems and today's a good day!


  • Hi

    Thanks for your reply.

    I find that most people I come across have never heard of Lupus

    They say you have got What!

    Zed Xx

  • Hi I am just pleased to be able to talk to people about lupus. I was diagnosed about 9 months ago but not talked to other sufferers I am a caretaker and find it very difficult some days just walking.I don't know what I can do or ask advice on working with lupus .

  • Hi there nice to talk to you.

    Sorry you are havering a bad time at work but some days do get better.

    Did you know Lupus is covered under the DDA disability discrimination act.

    Your employer has to make reasonable adjustments to help you at work you need to talk to them.

    Hope this helps

    Regards Zed

  • Thank you Zed its good to know there are people who can advise. Regards Chris

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